Giving Nutritional Supplements to Children with Down Syndrome
Giving nutritional supplements to children with Down syndrome has been a big topic for as long as I’ve been a member of the Down syndrome parent community. For those of you who aren’t familiar with it all, it seems to fall into a few groups: nutrivene, big-time concentrated supplements of the weird and whack varieties, and more regular supplements of known varieties (like gingko biloba in the morning, a regular dose).
Added to that, there are the philosophies behind the supplements – there is the one that seems to want to fundamentally change a child with Down syndrome – eradicate the extra chromosome, if you will.
Then there is the one that acknowledges that Down syndrome is actually a syndrome, and wonders what there is to help the syndrome pieces of it while still embracing the totality of the existence of that extra chromosome.
Last, there is the belief that Down syndrome is perfect in and of itself and we shouldn’t want to change any of it.
(I’m pretty sure that’s it, but if I’ve missed anything, correct me in the comments, okay? Thanks!)
The Pro/Con Piece
I thought the Pro/Con piece that Sruthi and Andi were brave enough to write was a fantastic way to start some dialogue about the different perspectives that exist in our community. It was messy – no denying that it got heated on my Facebook page – but sometimes the spark of truth shines brightest in some conflict. It’s not inherently a bad thing that we all have different perspectives on it.
I know that my own opinion on it all has changed with time and from hearing what other’s experiences have been.
When I first had Moxie, I was dead-against any type of supplement. I felt that if I gave her supplements, I would be trying to change who she fundamentally is.
Over time though, I started wondering how different that was from therapy.
I mean, everyone was saying that therapy was so great and important for our kids with Down syndrome and it did not seem to me that most of the people engaged in therapy for their children with Down syndrome were trying to change who their kids were; they were just trying to enhance their kid’s lives. Therapy – be it physical, occupational or speech – seemed to help.
We chose to drop out of all forms of therapy for Moxie except for speech. This was mostly because it didn’t seem to be doing anything and I don’t want to be doing something just for the sake of doing it. Also, we were traveling a lot and able to give Moxie a lot of experiences and opportunities that were (according to many therapists we spoke with) better than what she would get in a more traditional therapy-space. Climbing sand dunes in Mexico, for example, or working all of her muscles at Angkor Wat in Cambodia.
We dropped therapy and we had never been doing anything by way of supplements, mostly because we are not that type of family.
And we didn’t have anything pushing us to do anything differently. Moxie has always been extremely healthy. Her extra chromosome in no way equals any health issues AT ALL. We didn’t need to be taking anything to boost her immune system because her immune system was obviously functioning just fine on its own. She eats well, has a balanced (maybe “hippie-esque”) diet, and gets lots of exercise.
But because we’ve never given her anything by way of supplements doesn’t meant that I’m against it.
I am, after all, deaf and bi-polar. I take medication to keep my reality nice and steady, and I can only function in the hearing world because I wear very powerful hearing aids. I accept myself as a person with disabilities, and I think that I have a place in the world: I don’t need to be fixed or cured. But I do need technology in order to function with the world as it is (- enter my hearing aids, captioning and so forth), and I need the medication to allow me to live my best life for myself.
I don’t think we have to shun medication, technology or whatever in order to embrace disability.
I think we can embrace disability and still work with allowing everyone to live their best life, with their disability.
So no, I’m not against supplements per se.
What I am against is the tone that some sites take about supplements, where it all seems to be striving to make children with Down syndrome become more like their 46-chromosomed peers. I’m not interested in that. I like Moxie as she is, extra chromosome and all, but I am interested in trying to help her figure out what her best life might look like, with her disability.
I am also against snake oil, mumbo-jumbo, lack of testing, lack of qualified supervision; I’m wary of “Dr. Google” and mom-groups that seem to practice their own form of medicine, sans oversight, medically-approved tests and sometimes it seems, common sense.
But not all supplements are mumbo-jumbo, and not all of the parents out there that use supplements are trying to fundamentally change who their kids are. They have good sense and really work through the steps of figuring out what might help their child. Their children usually always have health issues and the type of supplements that they use are reported to help their children with those issues.
Is that bad? Wrong? I can’t see why it is. I mean, Moxie has food that is stuffed with garlic, is given half a papaya for breakfast, or like today, a fish that was cooked in coconut oil; some kids get a garlic or papaya pill as a supplement or a tablespoon of omega or coconut oil – there isn’t that much of a difference. Or rather, there is the difference of her getting it all in food form and others getting it in pill form (which can be highly concentrated, so it’s something to be very careful about), and the piece about how easily the nutrients are integrated by the body. Oh, and maybe taste!
Giving Nutritional Supplements to Children with Down Syndrome
This is not an easy subject to talk about because people care very deeply about their children and want to do the best thing for them. Furthermore, people have strong opinions about it all, as their beliefs about giving nutritional supplements to children with Down syndrome may reflect aspects of their religious faith, belief system or culture.
Easy or not, I think it’s a wonderful thing to dive in and talk about it. Through doing so, I honestly believe that we allow ourselves an opportunity to consider new perspectives or try on a different way of doing something.